Monday, August 19, 2019

Week 313: We are six

Lemon turns six years old today! I am honestly kind of stunned by this. On the one hand, it feels like an immeasurably long time ago that I had no children, and on the other hand it feels like not that long ago that he was just toddling around. The changes that take place over the first six years of a human's life are staggering. It's also hard to believe that until 6 years ago, CF wasn't part of our lives, whereas now it is something I think about multiple times a day, every single day.

In honor of the passage of all this time, we decided to get the kids their first professional haircuts. I've been chasing after them with a scissors myself since their hair was long enough to cut, and never got them to sit still for more than maybe 120 seconds at a time. Then, Lemon started asking about going to the barber for a haircut so we figured we'd give it a try. And wouldn't you know they sat as still as statues for almost 20 minutes each, obeying every instruction. The barbers both remarked on how amazingly well-behaved my kids were. I guess if you distill an entire day's worth of good behavior down to 20 minutes, amazing things can happen. During that 20 minutes. We will not discuss the rest of the day.

This year's birthday is extra-special as we are celebrating here in Lake Geneva, WI, at a resort we've been coming to every summer for the past 3 years. On top of that, Grandma and Grandpa are here from New York. And on top of that, the kids have gotten so many wonderful gifts--a marble slide set, books, new Transformers (that took the combined brain power and advanced degrees of both Mama and Papa Bear to convert from one form to the other), and on and on. Who wouldn't wake up at 4 a.m. on the day in question in anticipation of receiving such a bounty? Who indeed.

I am also a little amazed that this blog is now six years young. Every Monday for six years, I have sat down in the evening to reflect on the events of the week and share them with you all. Now it's almost as much of a habit as doing respiratory therapy and dispensing medications. I can't really imagine not doing it. CF can be a lonely journey, and knowing that you guys are out there following along each step of the way is very comforting. So, thank you for staying with us for a half-dozen years. I am looking forward to sharing the next half-dozen with you. I have such high hopes for them, for Lemon and everyone else with CF who is waiting for the new therapies that are just around the corner.

Monday, August 12, 2019

Week 312: Boston-American

I am pleased to report that the cefdinir appears to be doing its job, and Lemon's ear infection appears to have receded. We will give him the last dose tomorrow and hope that it doesn't reappear again after that. Meanwhile we are on to our last week of camp (what?!?!) so with any luck no one will come down with any of the various plagues that we've received warning emails about. Of course, on the drive home today, Lime said "Mama, Lemon is licking a rock." Thinking I'd misheard, I said, "Lemon, are you licking a rock?" To which he responded "No, I am putting my lips on the rock, then licking my lips, then putting them back on the rock." Ah. Of course. Well, that approach certainly does minimize the chances of catching who-knows-what from who-knows-where that rock originated.

In other fun car chatter, today Lemon asked me if he was a Boston-American, since he was born in Boston. I am still smiling about that.

We spent this ear-infection free weekend enjoying a visit with Uncle Jared and Auntie Lauren, in from NYC for some midwestern fun. They took the kids on an outing to a local splash pad and McDonald's and lived to tell the tale, a testament to their general fortitude as human beings. We also did all kinds of fun things as a family, including a family photo shoot, so hopefully sometime in the upcoming weeks I'll be able to share some higher-than-average quality pictures of all of us.

On Saturday, Grandma and Grandpa will be arriving from New York for a visit, during which time Lemon will celebrate his 6th birthday. Turning 6 is always momentous, but this year it is particularly important as Vertex is now enrolling people of Lemon's genotype, aged 6-12, in trials of their new triple drug combination! Of course, the nearest site to us is in Minneapolis, but I am planning on calling them this week to learn more about the study and find out if there is any way we could participate. If Lemon could be on that medication during the winter, well, I don't want to jinx anything but a girl can hope, right?

This weekend, we also bid a fond farewell to one of our most stalwart babysitters. You never know who is going to turn out to be a great one, but he truly was. He started taking care of the boys on summer afternoons when Lime was not yet one, and stuck with us until now, watching the boys on Sunday mornings so that  I could get out of the house for my long runs (and Papa Bear could get some work done). The boys absolutely adored him and had so many fun adventures with him. We will miss you, Henry, have a grand time in Spain!

Monday, August 5, 2019

Week 311: Just fill out this form

Hello August. It is hard to believe that Lemon's 6th trip around the sun is drawing to a close, but here we are. This weekend featured the kids' joint birthday party, which they have been so excited about all week. So, naturally, Lemon came home from camp (aka germ nexus of the universe) complaining of dizziness. At first, we attributed that to the fact that he'd forgotten his water bottle so he was pretty dehydrated. Also he chose not to eat a single molecule of his lunch. So, we figured that if we got some Gatorade and food into him, matters would improve. Hah.

He went to bed Friday night only to wake up weeping with ear pain and a fever. So, we gave him some ibuprofen and hoped against hope that it would pass. And, on Saturday morning, he still had a bit of a fever but seemed overall not in such bad shape. Saturday night wasn't that much better than Friday night, unfortunately, and he was still in a lot of pain and feverish on Sunday morning, with the party just hours away. I whisked him off to urgent care where, after using a giant syringe of water to flush his ear so she could actually see what was going on, the nurse diagnosed him with another ear infection--possibly a recurrence of the one he had when he had strep throat a few weeks ago, or maybe something new, who knows. In any case, we switched from amoxicillin to cefdinir, gave him the first dose as soon as we got home from the pharmacy, and gave him a dose of ibuprofen right before the party.

Thanks to the miracles of modern medicine, the party was a big success. The kids, who generally agree on nothing, were in complete solidarity on their cake choice from Costco: chocolate cake, chocolate filling, unicorn design. Done. Lots of friends showed up, and a splendid time was had by all. No one had the emotional stamina to make it much past 6:30 that night, which is always the sign of a good day.

With the memory of the endless summer camp forms still fresh in my mind, it is now time for school forms, it seems. Lime's school is making vague motions towards joining the rest of the 21st century in that instead of sending a thick envelope with those pre-printed forms that you fill out and then retain the canary copy while returning the white, rose, and periwinkle copies to the school, they now send an email with 71 different attachments. These attachments must then be downloaded, printed, filled out by hand with ink signatures, and then hand delivered to the school office. Progress!

Of particular note is the state immunization form, required by the state of Wisconsin for all children enrolling in preschool. It requires an ink signature from the pediatrician. Fine. I called the pediatrician's office, said that I needed the state form filled out for my kid, and asked when I could pick it up. I was informed that I could print off a copy of this (totally standard, state-issued) form, hand-deliver it to the office, fill out the please-fill-out-my-form form, leave these two documents with the office, and they would call me when I could pick them up. Because in the year of our lord 2019 it is imperative that parents spend an adequate amount of time driving around town delivering pieces of paper that contain only information that is also available through our state's online immunization registry. I mean what else would we do with our time. Maybe look for child care, since camp ends in two weeks? But that is a source of panic for another day.


Monday, July 29, 2019

Week 310: VDN

When the kids were young, I had anticipated that school would be a hotbed of contagion. What I had not anticipated was that school has nothing on the true hotbed of contagion, summer camp. Summer is not yet over, and between the kids' two camps we have had confirmed cases of strep throat, pneumonia, head lice, and now impetigo. Luckily, of these, only strep throat has so far made its way into our home. Lemon did have a pretty nasty stomach bug on Friday evening. However, I guess illnesses that merely result in a few loads of really gross laundry do not rise to the level of an official notice from camp. 
Despite this microbial onslaught, Lemon has achieved a new milestone: he is finally through the 50-lb barrier. This means that after 11 hard-fought months, Lemon is finally ever so slightly larger than he was at the end of last summer. Hooray! Now if we can just pack on another pound or two before the start of the school year, I will feel like we're heading into first grade with a leg up on the impending winter.

We have some old friends staying with us this evening. I thought I was excited about seeing them and having them stay with us. But Lemon and Lime were REALLY excited. Especially because our friends have a 7-year-old who is amazing (legitimately, but especially so in the eyes of the 4- and almost-6-year-old). So, this evening was very reminiscent of our weekly dinners during graduate school, but with a much higher level of background chaos than we had in those days. I am pleased to report that the level of nerd humor is undiminished, however.

I am not at all prepared for the fact that August begins this week, and with it come a slew of fun events and also a lot of planning that has to happen. We have the kids' joint birthday party this weekend, followed by a visit from Uncle Jared and Auntie Lauren, followed by a visit from Grandma and Grandpa from New York (and our annual trip to Lake Geneva, which will include Lemon's 6th birthday--what???). Sometime in there I also have to find a new afternoon nanny to cover the afternoons for the last year that we will have a kid at home all afternoon. Oh and Lemon's quarterly clinic visit at the end of the month. And then before you know it, fall will be upon us, Lime will be in 4k, and Lemon will be in first grade!  

Monday, July 22, 2019

Week 309: Personal growth

After a quick trip to Minneapolis last week, I got right back into the swing of things on Wednesday morning with Lime's 4-year-old check-up. Quite amazingly, this is his first contact with the medical establishment since his 3-year-old check-up. I am pleased to report that Lime's growth has picked up tremendously, insofar as he is now 11th percentile for height instead of 6th. His pediatrician was particularly pleased to note that he is now in the 28th percentile for weight, so a true giant among the smaller-than-average. Other than that, there were no remarkable findings. He received two shots, the administration of which required all four of my limbs as well as all four of those belonging to the medical assistant. The sound track went something like this: "No no no no OWW OWW THAT HURTS <pause> can I have a sticker now?" And that was it.

Lemon has been doing really well at his new summer camp. I assume he's getting his enzymes with meals and snacks, although it is hard to tell since he is reluctant to talk about anything that happened during the day, much less details about his care. So, I am forced to go by the metrics I can evaluate, which are poop and weight gain. Both appear OK at the moment so I am taking that as evidence enough. I actually haven't weighed him since we came back from our vacation so I should have him hop on the scales at some point. But, I can tell just by looking at him that he has that wonderful summer fleshiness about him that will be our saving grace come fall.

We had a fun family weekend doing the usual things around Madison, a fireman's block party including a ride up in the ladder of a ladder truck, and a trip to the zoo. Both kids apparently had so much fun over the weekend that they were reluctant for the week to get going again, and did not want to be left at their respective camps this morning. Meanwhile, I think Papa Bear and I might have been secretly relieved to retreat to the relative peace and solitude of our respective offices. Not that we didn't have fun over the weekend, mind you, but man those kids have a lot of energy. I wonder where they got that from (in other news, my father is on a multi-week hiking trip in the Alps and I ran 18 miles on Sunday...).

It definitely feels nice to settle into some kind of routine after all this traveling around. None of us are going anywhere until mid August, so it will be nice to have a few weeks of just going to camp and work and doing things around town. Lest things should get too dull, a couple of kids from Lemon's camp were sent home with head lice today. Not from Lemon's group, and he was checked and doesn't have them, but it's still enough to cause raging paranoia and itching!

Monday, July 15, 2019

Week 308: Return to reality

Our trip to Cape Cod was splendid. We saw so many wonderful friends, celebrated Lime's 4th birthday, and generally had a blast. This trip did make me appreciate how much easier travel with the kids has become in the last year. Admittedly, it is still far from easy. But it is far less impossible than it once was, and I am very grateful for that. We flew with the vest without incident, although Lemon did not exactly live up to his end of the bargain of pulling it through the airports. In the Boston airport, they wanted to examine the contents of the g-tube replacement pack that I was carrying as well as the formula pump, but after consultation with the security supervisor, both of them were allowed through without incident. Now that we are all back in Wisconsin safe and sound, I think I can breathe a sigh of relief that no one got sick on the trip.

Lemon started at a new camp today, which he is very excited about. I didn't have more than 5 minutes to train his counselor on the use of enzymes, but Lemon reported that it all went fine and that he got them at lunch and both snacks. So, hopefully that's true. He had a great time so I'm happy about that at any rate.

I'm actually writing this tonight in Minnesota, thanks to an inconveniently-timed work trip, so I will leave you with a bunch of photos courtesy of Papa Bear, and pick up the written narrative in more detail next week, when we begin a series of four (yes, four!) consecutive weeks with a fairly consistent schedule. What a luxury that will be!

Monday, July 8, 2019

Week 307: EsCape

We made it to the east coast for our vacation! Travel was exciting as always, so many moving parts. But, we pulled it off and I think this far into the trip it is safe to say that we didn't forget anything important. We finished Lemon's course of amoxicillin today and it seems like he is in fine fettle so hopefully the whole strep episode is behind us. We have been having an absolute blast reconnecting with old friends and enjoying the coast. Since we are on vacation, the written part of the blog is also on semi-vacation, so here are some photos and back at you next week!